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bethtot
@bethtot

Posts: 5
Joined: Apr 09, 2017

Chronic bladder or lower abdomen pain

Posted by @bethtot, Apr 9, 2017

I have been dealing with lower abdomen pain for 3 years. I have had many tests but really no results. testing has showed my bladder is healthy but I have such a throbbing pain it does seem to get worse when my bladder is full. Not knowing is so hard and having pain you can’t control is aweful. I have had many tests done but no results, anyone out there have dealt with this type of condition please let me know I’m looking for treatment ideas or medication ideas

REPLY

Hi @bethtot,

Apologies for the delayed response, but I’d like to welcome you to Connect; we’re so glad you’ve joined us.
According to my research online, I wonder if your symptoms of painful bladder could be interstitial cystitis. It is a tricky condition as it’s tough to diagnose,
Here’s some information from Mayo Clinic: http://mayocl.in/2pbOTpC

You may also wish to view this discussion:
Interstitial Cystitis – I would like to connect with others: http://mayocl.in/2babJXN
Uncomfortable bladder pressure: http://mayocl.in/2pwD4d5

In the meantime, I’d like to introduce you to a few members who have talked about interstitial cystitis, and share some of your symptoms; please meet @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem.

@bethtot, have you made any changes to your diet? Are you taking any medication to relieve the pain?

@kanaazpereira

Hi @bethtot,

Apologies for the delayed response, but I’d like to welcome you to Connect; we’re so glad you’ve joined us.
According to my research online, I wonder if your symptoms of painful bladder could be interstitial cystitis. It is a tricky condition as it’s tough to diagnose,
Here’s some information from Mayo Clinic: http://mayocl.in/2pbOTpC

You may also wish to view this discussion:
Interstitial Cystitis – I would like to connect with others: http://mayocl.in/2babJXN
Uncomfortable bladder pressure: http://mayocl.in/2pwD4d5

In the meantime, I’d like to introduce you to a few members who have talked about interstitial cystitis, and share some of your symptoms; please meet @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem.

@bethtot, have you made any changes to your diet? Are you taking any medication to relieve the pain?

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I have had Interstitial Cystitis for many years now. It is true it is very difficult to diagnose. I would guess it was close to 10 years before I was diagnosed and I suffered terribly during that time. I was treated for urinary tract infections over and over which I think I never had at all. I had terrible pain that went down my right leg to the knee and I had frequency and urgency needing to go to the bathroom very often. Riding in a car with all of the bouncing around was excruciating making it way, way worse and even set it off if it had not been bad at the time. This began to restrict my life and made me want to stay at home rather than have to look for the bathroom every time I went in a store. I finally found a urologist who thought maybe I had IC. He did a cystoscopy and was able to diagnose this. He put me on Elmiron which changed my life and I have been on it for almost 20 years now. I still have IC but it is now manageable. If you can find a urogynecologist not too far from where you live, these are the doctors who specialize in IC. My uro has tried me on about everything remotely related to IC but most of them have side effects. I am finally now just on the Elmiron plus Pyridium when I have a flare. The Elmiron does have some manageable side effects such as high liver enzymes and hair loss. My gastroenterologist monitors the liver enzymes plus the colitis which I also have. It seems that multiple pelvic disorders often go together and I also had endometriosis which was contained by a hysterectomy. I have found that diet helps the most for the IC and colitis so I don’t have any trouble sticking to it. I have a tendency to yeast overgrowth so the diet also helps to contain that. My diet restricts acidic and spicy foods, gluten, dairy, sugar, yeast, coffee, tea, chocolate, colas, some fruits (except for blueberries and fuji apples,) and artificial sweeteners. I also wear white cotton underwear, skirts and pants. Internal pelvic floor therapy released those tight muscles both vaginal and rectal and provided many other useful tips to control IC such as diet, etc. I am a member of the National IC Association and their forum Inspire also includes helpful tips and encouragement. Good luck. Hope you can get on top of this soon.

Welcome back, @Gray; thank you so much for sharing your story. Did your urologist explain what causes this condition? Have you made other lifestyle changes to find relief?

As far as I know, there is no explanation for IC. I think it is an autoimmune problem as many of these run in my family such as Diabetes I, cancer, inactive thyroid, endocrine problems, etc. As far as other lifestyle changes, 1. I never take a bath, only a shower; 2. I use a very mild ph non soap; 3. I sleep in the nude; 4. I take a change of clothes when I go out; 5. When I am at home, I wear a white cotton skirt and no underwear; 6. In the car and at other events, I use a thick cushion; 7. I meditate and have done Tai Chi (Yoga is also good but not the strenuous kind;) 7. I change white cotton underwear several times a day; 8. If I get in a tight, I count backwards from 23 to 0 (It is amazing how this helps;) 9. At home, I try to train my bladder to not go to the bathroom more often than every 3 hours (Not easy but is recommended;) 10. I drink a coffee substitute (Teeccino is very good.;) 11. I drink 8 glasses of water a day; 12 Some people recommend supplements like Aloe Vera, Turmeric, Pau D’Arco, etc. (I have not found these helpful but some people swear by them.;) 13. I do take a probiotic and a prebiotic. 14. Elmiron must be taken on an empty stomach 3 times a day (This takes planning;) 15. I do take an antidepressant; 16. If you are in a bad flare, it is recommended that you take a large dose of baking soda (I usually take Tums as they are also calcium.) There are many more but cannot think of them right now.

@kanaazpereira

Hi @bethtot,

Apologies for the delayed response, but I’d like to welcome you to Connect; we’re so glad you’ve joined us.
According to my research online, I wonder if your symptoms of painful bladder could be interstitial cystitis. It is a tricky condition as it’s tough to diagnose,
Here’s some information from Mayo Clinic: http://mayocl.in/2pbOTpC

You may also wish to view this discussion:
Interstitial Cystitis – I would like to connect with others: http://mayocl.in/2babJXN
Uncomfortable bladder pressure: http://mayocl.in/2pwD4d5

In the meantime, I’d like to introduce you to a few members who have talked about interstitial cystitis, and share some of your symptoms; please meet @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem.

@bethtot, have you made any changes to your diet? Are you taking any medication to relieve the pain?

Jump to this post

I just started physically therapy today and received some exercises, I can tell I have did something different today my pain level is high tonight. I have the diet plan as well I will miss some of the items I can’t have but the constant discomfort and pain is very difficult to deal with. I have not started any medication yet but I’m looking forward to getting the help I need. I will be asking my urologist about medication. I have read Valium helps when flares happen have you tried low does of this medication?

@kanaazpereira

Hi @bethtot,

Apologies for the delayed response, but I’d like to welcome you to Connect; we’re so glad you’ve joined us.
According to my research online, I wonder if your symptoms of painful bladder could be interstitial cystitis. It is a tricky condition as it’s tough to diagnose,
Here’s some information from Mayo Clinic: http://mayocl.in/2pbOTpC

You may also wish to view this discussion:
Interstitial Cystitis – I would like to connect with others: http://mayocl.in/2babJXN
Uncomfortable bladder pressure: http://mayocl.in/2pwD4d5

In the meantime, I’d like to introduce you to a few members who have talked about interstitial cystitis, and share some of your symptoms; please meet @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem.

@bethtot, have you made any changes to your diet? Are you taking any medication to relieve the pain?

Jump to this post

Yes, I have tried the Valium suppositories but did not see they helped at all. I am not going to take any medication that does not really help. I did try Amitriptyline and it gave me severe heart palpitations. I wish I could take it because it did more for my depression than anything I have taken before. Don’t worry. What happened to me is very rare and most people say it really helps them. I have also tried Hydroxyzine which is an antihistamine which did not help my IC. However, I do have chronic sinusitis so I do need an antihistamine. Detrol and Vesicare are two medicines that ease urgency and frequency. I have tried both and they do help but I don’t like the way they make me feel. To explain, they make me feel like I have to go but can’t go. A new drug, Naltrexone, that is used to suppress cravings in alcoholics, has had some success for IC. It did not help me. Another new drug, Myrbetriq, is for urgency, frequency and leakage and my uro really likes this one but it gave me a really bad headache. Really the only drug that helps my IC is Elmiron which I have taken for almost 20 years. Most people with IC do not take it because it costs $700 a month. Thankfully my insurance does cover it but, it does have some side effects. These are high liver enzymes, hair loss and months to take affect. The strange thing is that the hair loss occurs in just one 2 inch streak across the top of my head and down the back. I will just have to live with it because I can’t live without the Elmiron The fact it takes many months to see any results of Elmiron discourages some people. I am a stubborn woman and when I am in pain I will go to any length to get relief. I took Elmiron 3 times a day for 9 months before I saw any effect. As you can see there are many medications that can help and new ones are coming out regularly. I am sure your doctor will know what is best for you. Take heart and stay strong.

@kanaazpereira

Welcome back, @Gray; thank you so much for sharing your story. Did your urologist explain what causes this condition? Have you made other lifestyle changes to find relief?

Jump to this post

I just went to physical therapy yesterday and was given exercises and diet changes to try for two weeks and than see if this helps with pain relief

@kanaazpereira

Hi @bethtot,

Apologies for the delayed response, but I’d like to welcome you to Connect; we’re so glad you’ve joined us.
According to my research online, I wonder if your symptoms of painful bladder could be interstitial cystitis. It is a tricky condition as it’s tough to diagnose,
Here’s some information from Mayo Clinic: http://mayocl.in/2pbOTpC

You may also wish to view this discussion:
Interstitial Cystitis – I would like to connect with others: http://mayocl.in/2babJXN
Uncomfortable bladder pressure: http://mayocl.in/2pwD4d5

In the meantime, I’d like to introduce you to a few members who have talked about interstitial cystitis, and share some of your symptoms; please meet @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem.

@bethtot, have you made any changes to your diet? Are you taking any medication to relieve the pain?

Jump to this post

I have had IC for 10 years & follow a restricted diet for IC, tried Elmiron but the side effects were awful. I can mange my symptoms but presently have been having chronic yeast infections and UTI's. I think my autoimmune system is terribly compromised due to antibiotic treatment etc. Looking for physician or autoimmune specialist in my area of Santa Monica CA. So discouraged at this point.

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